My Own Country

by Abraham Verghese

  WILL JOHNSON survived his surgery. He went to his brother’s place on Kiawah Island on the South Carolina coast to recover. His recuperation was slow and difficult. His back had never stopped hurting.

  On a follow-up visit with the surgical team, he complained bitterly about his back pain, but it did not seem to register. Their only interest was in Will’s chest, and checking that the sternum, which they had split to get to the heart and which they had then wired together at the end of the operation, was healing well.

  “They told me I needed to pick up the pace of my rehabilitation. I felt as if I was being chastised for complaining of the back pain. As I said to Bess later, the after-sales service was poor.”

  It was left to a chiropractor in Kentucky, many months later, to take x-rays and diagnose the fractured vertebrae in his back. The fractures were a consequence of the seizure Will suffered in his truck after Chuck Hoover’s funeral.

  Exactly four weeks after his surgery, Will Johnson experienced the sudden onset of fever, severe sore throat, and lymph node enlargement in his neck and armpits. He had such tremendous fatigue that the act of bringing a coffee cup to his lips seemed almost beyond him. At night he had sweats that drenched the sheets and required them to be changed once or twice. This dramatic illness lasted a few days, and although the fever and night sweats gradually subsided, the malaise and fatigue did not.

  A doctor in Charleston was unable to put a finger on his symptoms—his surgical wounds were healing well. Mrs. Johnson dutifully told him about the blood transfusions and the intern’s warning. The doctor listened but said nothing. He wrote it off as a “viral” illness, a diagnosis that in retrospect was quite correct.

  Many months later when Will Johnson returned to Kentucky, he sought out a physician who could follow him for his heart problems. He had heard good things about a new young doctor near Pikeville, Sarah Presnell. The fact that she worshipped at his church, that she and her husband were new and active members, was a definite plus.

  Will now handed me Sarah’s summary of her involvement with him. He continued to speak as I scanned Sarah’s notes. She had sent away for his medical records from Duke. Will Johnson described to her in detail the viral or “mono”-like illness which still lingered many months after its acute manifestations had subsided.

  Then, a year later, on a routine follow-up visit, Sarah was alarmed to discover that he still had abnormally enlarged lymph nodes in his neck. One in particular was so grossly enlarged that it was visible across the room. There were also enlarged nodes in his armpits and groin. Sarah’s first thought was that Will Johnson had a lymphoma—a cancer of the lymph nodes—or else a leukemia. She felt carefully for the spleen, which is commonly enlarged in these disorders. Will’s was not enlarged.

  Sarah elected to put him in the hospital to initiate the workup of his puzzling symptoms and signs. His heart seemed fine. But a CAT scan of his abdomen and chest revealed that he had enlarged nodes straddling his abdominal aorta.

  She went back over the medical records from Duke. Will Johnson had received a huge number of blood and plasma infusions during his stay at Duke.

  A warning bell began to sound in Sarah’s brain. Could Will have contracted HIV from the transfusions? She recognized that the “viral” illness Will Johnson had developed four weeks after the transfusion was consistent with reports describing the first stage of HIV infection. She ordered the HIV test.

  To me, this was a remarkably astute observation, considering how new these reports of “primary HIV infection” were and considering that Sarah was not someone who dealt with AIDS every day.

  The first report of this “HIV-mononucleosis” had come from Sydney, Australia, just that year. It happened like this: A group of researchers were following a large cohort of gay Australian men as part of an ongoing study of hepatitis that had begun years before AIDS. One patient in their study had contracted Herpes simplex infection of the rectum, a painful and debilitating condition that rendered him sexually abstinent for a month. Then, after he was completely recovered, the patient had anal receptive intercourse with another male who was also part of the Sydney study. In retrospect, from blood samples that had been stored and that were tested later when the HIV test was available, it was clear this new partner harbored HIV. A little over a week after this sexual contact, the first man developed an illness much like infectious mononucleosis: rash, fever, sore throat, headache, swollen nodes. Blood drawn before, during and after this illness and tested later for HIV showed that he was not infected before this sexual encounter, but the virus appeared immediately afterward. Other medical reports confirmed that almost 50 percent of patients when they first acquire HIV have a “mono”-like illness. Fred Goodson could recall such an illness; so could Otis Jackson, Bobby Keller and several others.

  The blood test Sarah ordered on Mr. Johnson came back in a week.

  “It was Friday when Sarah called. We were at the supper table with plans to see the Pikeville-Hazard football game. We went to her office. She was alone. I was really apprehensive. She told us what was wrong. We all cried. She said she had tried and failed to reach the minister at the church where we all worship; she wanted his advice and assistance. I was glad she didn’t get him. It wouldn’t be fair for him to know unless my son and his wife, who are very close to the minister, were also to know.

  “Sarah was very emotional when she told us. She has been our support and given tender care ever since. She even comes to the house to draw blood samples. She got a sample of Bess’s blood right away and then called us back down in about a week with the news Bess had it too. My heart broke then. My grief that my Bess had been infected with this virus from hell knows no bounds.”

  There were tears in both their eyes now. He squeezed his wife’s hand and kissed it. I was fighting back tears.

  “Duke didn’t warn us I was at risk. If they had, Bess wouldn’t be infected now. They saved my life and I am grateful. And even if they told me they were giving me AIDS infected blood, I would have said, ‘Go ahead!’ But they should have warned me about the possibility, helped me to avoid infecting Bess.”

  Will Johnson was barely controlling the anger in his voice. He took a deep breath to compose himself. Bess Johnson rose from the recliner to hug him, to sit beside him and to wipe away his tears. The mattress was sagging under the weight of the three of us.

  “I had been infected in March of 1985. They began screening blood only a few months after that. The blood they gave me was not screened. Although they knew, or should have known, they didn’t tell me I was at risk for AIDS. So I infected my Bess and we knew nothing about it until eighteen months later.”

  I was trying to think objectively about Duke University’s role in this regard. He was talking about the year 1985: the connection between AIDS and blood transfusions was known for at least three years by then—even longer in academic centers. This was a time, even in Tennessee, when people were so aware of the risk of blood transfusions that they had stopped donating blood, mistakenly equating any contact with the blood transfusion system as putting them at risk. This was one reason why Olivia Sells of the Red Cross had recruited me to speak about AIDS, to clear up that sort of misunderstanding.

  Prior to the blood test for HIV, the Centers for Disease Control (CDC) had pushed for testing for antibodies to hepatitis B as a means of indirectly screening for HIV infection: Many donors who had HIV—drug addicts and gay men in particular—often also had antibodies to the hepatitis B virus since the hepatitis B virus was spread in ways similar to HIV. The CDC had evidence that in the absence of a direct test for AIDS, such a “surrogate” marker could crudely screen blood. One of the most tragic tales recounted in Randy Shilts’s And the Band Played On is the procrastination, delay and rationalization by leaders of national blood banking institutions and the FDA who were unwilling to institute screening for hepatitis B as a surrogate marker for HIV. It would cost blood banks vast sums of money to institute these tests. At an epic meeting on Janua
ry 4, 1983, at the CDC, the president of the New York Blood Center is quoted as saying, “Don’t overstate the facts. There are at most three cases of AIDS from blood donation and the evidence in two of these cases is very soft. And there are only a handful of cases among hemophiliacs.” Equally vocal in their opposition were gay groups who argued that such testing would stigmatize gay men. It became a cliché for blood bankers to say the chance of getting HIV from a transfusion was one in a million.

  By early 1985, the year that Will was infected, there were over one hundred cases of unequivocal blood transfusion-related AIDS and perhaps hundreds more who were still asymptomatic. Still, except for a few places like Stanford, blood banks had not put into place the hepatitis B screening the CDC had recommended in 1983.

  Undoubtedly the blood bank at Duke, like every other blood bank in the country, had discussions about AIDS risk and was aware of the potential for this agent to enter their system. A patient like Will, with his huge transfusion requirement, was particularly at risk. Perhaps, as often happens in big institutions, of the many people involved in his care, each assumed that someone else would warn him. The cryptic comment by the black intern had been the closest thing to a warning. There was no legal obligation to inform patients. The way to view what happened to Will Johnson is as a failure, not of Duke, but of society as a whole.

  An hour had passed. I wanted to get on to work up Will’s present problem and start therapy and make him comfortable. His main complaint now was difficulty and pain in swallowing—dysphagia. To swallow anything hurt him in his chest and upper abdomen. The pain probably came from the lower end of his esophagus.

  I stood up and began to examine Will. I found a few white plaques of Candida, thrush, stuck to the mucous membrane of his mouth. Perhaps candidal infection of his esophagus was responsible for his pain. Another common cause of dysphagia in immunocompromised patients like Will was Herpes simplex infection, but I saw no herpetic lesions in his mouth or on his lips.

  With his pajama top off, he looked like an Auschwitz survivor; the buzz cut added to that appearance. There were big lymph nodes in his neck and armpits and groin, but according to him, they were nowhere as big as they had been. His chest scar was well healed, and when I tried to “rock” the sternum it was solid. The apex of his heart was palpable in the space between the fourth and fifth ribs, and it gently lifted my finger up and down. The heart sounds were normal. The scars on his leg where the saphenous veins had been harvested for the bypass grafts were well healed.

  I elected to begin Will Johnson on amphotericin B, the powerful but toxic drug that was effective against Candida; it was given intravenously. (The late Scotty Daws, who had received amphotericin for weeks for his cryptococcal meningitis, had referred to it as “Shake ’n’ Bake,” because of the chills and fever it produced.) I would also use intravenous acyclovir that first night, a drug for Herpes simplex. I wrote an order asking a colleague in gastroenterology to see Will the next morning.

  I WALKED BACK to Mountain Home. Outside, the weather had changed. The stars were blacked out by clouds; I could see flashes of lightning far away and I could smell the rain in the air. I thought of calling the VA police to ask for a ride home, but then decided against it.

  The wind was whipping through the trees, and I was leaning into it, my head down and my arms wrapped around myself, feeling dust and grit sting my cheeks.

  I was deeply affected by the story of the Johnsons, very sympathetic to them. Why? Was it easier for me to sympathize and identify with this beautiful couple because they were not gay, not intravenous drug users? Because they reminded me of my parents? Will Johnson had at one point used the words “innocent victim” when describing his and his wife’s situation. I had wanted to interrupt him and say that all victims of this virus were innocent.

  Yet I hadn’t said it, partly because I didn’t want to engage in that sort of a debate with him. It would have been unnecessary and even churlish to have done so. But in addition, I said nothing because for the briefest moment I had accepted what he said as if he were stating a well-known fact!

  I liked to think of myself as nonjudgmental; I thought I didn’t discriminate in my services: a gay man with AIDS or a drug abuser could expect to be treated the same way as I would treat anyone else. But did I have a blind spot? After all, how many other patients had I personally escorted up to their hospital rooms? When had I ever carried luggage for patients, spent hours of my evening listening to them and settling them in, allowing them to dictate the pace of the interview, leaving only when I thought they would not mind my departure?

  And if I had a blind spot, a class prejudice, was it perhaps because I too, subconsciously, subscribed to the concept of their “innocence”? The word “innocent,” used in this context, implied, of course, that everyone else out there with HIV who did not get it by a blood transfusion was “guilty.”

  At the root of this metaphor of guilt is the fact that, in North America, males with HIV outnumber females, almost ten to one. Anal intercourse is an efficient means of transmitting the virus—more efficient than vaginal intercourse, perhaps because with anal intercourse there is always some microscopic trauma to the rectal mucous membrane. And in all sexual acts, whether gay or straight, it is the male that is always injecting semen, injecting a secretion into a partner, whether a woman or another man. For these reasons, gay men had been disproportionately affected by the virus. “AIDS” in a man had come to mean “gay” until proven otherwise.

  Oh yes, there were the other Hs: hemophiliac, Haitian, heroin, heterosexual. But the big H stood for homosexual.

  To a heterosexual world—perhaps a slightly envious heterosexual world—it was possible to point at sexual behavior in some gay men (its variety, the anonymity, the frequency) and at promiscuity in general, and link it with the deadly virus as cause and effect. Almost as if, without gay men, there would be no AIDS. And it was easy to view intravenous drug addicts as pernicious disseminators and recipients of a deadly virus; this was not a great leap from the Hollywood depiction of them as thieving, lying, murdering individuals who were a drag on society.

  Of course, the virus, unlike human beings, lacked all class prejudice. The proof of this was Africa, where HIV behaved like gonorrhea or syphilis: men and women were affected in equal numbers. In Africa, other sexually transmitted diseases which cause open ulcers on the genitals were common and seemed to thereby facilitate the transmission of HIV. Another widely touted reason for the democratic spread of the virus in Africa was that friable scar tissue from female circumcision made vaginal intercourse somewhat traumatic, prone to cause microscopic bleeding, made it akin to anal intercourse. Since these “facts” about HIV in Africa were standard fare in any journalist’s update on AIDS, it had become possible for middle America to believe—if only subconsciously—that since Africans practiced female circumcision, copulated indiscriminately, and suffered chronically from other sexually transmitted infections, they too were in some way “guilty,” just like gay men.

  It is interesting to me that many gay men infected with HIV can use the metaphors of innocence and guilt just as the Johnsons did. A friend by the name of James, whose quiet dignity I have come to admire, said to me, “I have nobody to blame. It’s my behavior that did this, that made me get the virus. I’m not saying that I deserved this, but I am saying that I have no one to blame but myself. I never used a condom, never thought of it. In the heyday of being gay in a big city—the bathhouses, Fire Island and all that—I had more sex than ten heterosexuals would have had in a lifetime. I don’t believe it’s a punishment from God or any of that kind of crap, but it clearly was a consequence of a certain lifestyle. Just being gay, just being attracted to men, isn’t the issue. For most of us, being gay also meant sex, sex, sex. As if to make up for all the years we hid, and pretended, and listened to queer jokes. I mean we fucked like crazy! And now here we are.”

  And then, as if feeling the need to qualify what he had just said, James had looked
around at the bare study in my house where I write and said defiantly, “Mind you, I won’t take anything back. As much suffering as I have gone through—my lover’s death in Charlotte, my illness—I would not take any of it back. Most gay men have traveled to several countries, have seen the best shows, movies, plays, have taken an interest in art, in their clothes, in the way their house is decorated, have experienced more of this world than any heterosexual. To me, a heterosexual male is a slob. If he gets divorced the walls of his house will stay as bare as when he first moved in, and it will be dirty, dirty, dirty. If he gets married, that’s it—he has no desire to improve himself past that. His idea of a good time is to get a six-pack and park his truck on the side of the road with his buddy and drink. He might beat his wife, be mean to his kids and ultimately die where he was born having seen nothing, done nothing. But, by God, the one thing he knows is how he feels about queers! When he sees a queer he can look down on him, feel contempt, beat up a queer because it’s justified.”

  I thought of myself as completely different from, say, the televangelists, who had exploited this theme of guilt and innocence for all it was worth. Jimmy Swaggart and Jim Bakker had been obsessed with sex, preaching incessantly about its evils, bringing in examples of pornography from school libraries and from magazine stands so as to show their congregation the evils out there. After their downfall, it was clear their polemic was a classic example of what Freud called “reaction formation”: deep sexual urges in the subconscious mind had resulted in the conscious mind overreacting in the opposite direction. Ultimately, the subconscious broke through: both these men of the cloth were betrayed by sexual desires that could not be suppressed.